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Disability Policy Consortium Weekly Update
Dear william,
This week's Update comes from a tube on a small pond in Maine. The joys of summer!
We're asking anyone who can to be in Worcester on
Wednesday or Boston on Friday for a show of support for DDS's new regulations. See the calendar for details.
Friday is the SILC ADA picnic and Boston is celebrating on the 26th. Also, look for the DPC there, too.
Bill Allan
Disability Policy Consortium
wfallan@dpcma.org| 617-542-3822
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Editorial: Opportunity for You
MassHealth is sponsoring a "consumer focused" meeting on July 21, 2011 at 10 AM in the 11th floor conference room of 1 Ashburton Place.
No agenda has been announced, but the location speaks volumes about how many people they expect. The room seats 25 people comfortably.
Please join us for what may or may not be an important discussion.
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FY12 Budget: Governor's Action
Governor Deval Patrick surprised everyone by not vetoing any line items. Thus, the overall increases in disability agency funding to FY11 levels stand as they came out of Conference Committee. |
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Advocates Corner: Emergency Shelter Regulations Approved
Regulations that cover buildings that are used for temporary emergency shelters for winter storms will now have to meet state codes for fire safety and accessibility. The new regulations cover churches, veterans halls, and other locations that were not designed to house people overnight. The Governor approved the changes last week. There was an internal controversy over whether the Architectural Access Board regulations should apply. That was resolved in favor of using AAB regs..
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Advocates Corner: WH Responds
from Karen Schneiderman, BCIL
After a few days of advocacy focused on the White House, Valerie Jarrett, Senior Advisor to President Obama today posted a blog about the importance of Medicaid to Americans with Disabilities and our families. You can read the blog for yourself (below), but this is a MAJOR STEP FORWARD for our community in our efforts to oppose cuts to Medicaid and call for real reform of the system.
Thank you to AAPD for representing us at the White House and THANKS TO EVERYONE who responded to our action alert and sent emails to Valerie Jarett!
Congratulations for helping make this happen!
But the battle is far from over!
We need to focus our energy on Congress to let them know that they need to reform, not cut, Medicaid. Heres a link where you can TAKE ACTION:
http://ly.adapt.org/3
Please distribute this action alert through your networks, asking individuals with disabilities, attendants, and our friends and families to do the same.
The ADAPT Community
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From the White House Blog
For Americans with Disabilities and their Families, Medicaid Matters Posted by Valerie Jarrett on July 14, 2011 at 12:40 PM EDT
This week, my colleagues and I met with families from all over the country that are affiliated with the American Association of People with Disabilities, Easter Seals, and the Consortium for Citizens with Disabilities.
Their stories sent the message that social safety net programs such as Medicaid are more than just numbers in a budget. Im honored to share some of those stories with all of you.
Linda Guzman told us about her son Javi, who has both autism and a connective tissue disorder. Medicaid pays for medications, surgeries, and therapies to help him stay healthy, and for personal care services to help him stay productive. Without Medicaid, Linda would have to quit her job and go on public assistance to care for him full time.
Shannon Saunders, a 13 year-old from Columbus, Ohio, was another one of our guests at the White House. When Shannon was two, doctors diagnosed her with cerebral palsy, and thought she would never be able to walk or talk. But eleven years later, I watched as she stood from her wheelchair and proudly told me that Medicaid had helped prove her doctors wrong. Her mother was able to ensure that she received treatment in order to live up to her full potential. When she grows up, she intends to become a teacher, and live independently.
There's no question that to tackle our nations debt, we will have to make some tough choices. But are there any Americans who really believe that we should ask Linda to quit her job when we need everyone contributing to our economy, or that we should ask Shannon to sacrifice her future just so that a millionaire can receive another tax cut?
Yet these are exactly the kind of sacrifices that the House Republican plan would demand from Linda, Shannon, and thousands of families like theirs.
President Obama simply does not believe that this is fair.
Slashing Medicaid for Americans with disabilities and their families is also bad economics. If Linda is forced to leave the workforce, and Shannon doesn'tt get the health care she needs in order to join the workforce when she grows up, they would both ultimately be receiving government benefits, rather than contributing to society. This would place a large cost on taxpayers over the long run.
In Washington, its easy to frame every debate in terms of political winners and losers. But stories such as Lindas and Shannons are powerful reminders of what really is at stake.
As President Obama works toward a deal that allows our country to live within its means, hell remember the Americans who depend on programs such as Medicaid. We hope that courageous families like the ones I met this week will inspire all our elected officials to put partisanship aside, and do what is best for our country.
Valerie Jarrett is a Senior Advisor to President Barack Obama.
Heres a link where you can read the blog online.
http://ly.adapt.org/2
NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org
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On the Calendar: Dual Eligibles
Mass Health is sponsoring a meeting for Consumer who are on MassHealth and Medicare. No agenda is available at this time.
Consumer focused meeting
July 21, 2011, 10am - 12pm
1 Ashburton Place, 11th floor
Matta Conference Room
Boston, MA
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On the Calendar: Bunny Hop
Bunny Hop across South Station with VSA Massachusetts and Sidewalk Sam!
July 20th from 12 noon - 6pm
South Station - Dewey Square Plaza
(Rain date:Friday, July 22nd)
If you would like to participate in the event please contact sidewalk@sidewalksam.com or rsvp@vsamass.org for more information.
We want poets, painters, chalk artists, dancers, musicians, actors, and anyone willing to share their love of the arts to help VSA Massachusetts create a VSA "Zestival." The VSA Zestival features a "Flash Mob" spontaneous public dance - the "Bunny Hop" - at South Station and Dewey Square plaza. Hundreds of people will dance the Bunny Hop together in an expression of creativity and diversity. Besides joining the bunny hop, Sidewalk Sam will be drawing a giant chalk artwork. "Quickie Performances" of music, dance and poetry will also be presented in front of South Station and on Dewey Square Plaza. We invite you to join in the fun.
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On the Calendar: DDS Aversives Hearings
PUBLIC HEARINGS HAVE BEEN SCHEDULED:
Wednesday, July 20, 2011, from 10:00 a.m. to 2:00 p.m.
Worcester Public Main Library
The Saxe Room
3 Salem Square
Worcester, MA 01608
Friday, July 22, 2011, from 10:00 a.m. to 4:00 p.m. at: John W. McCormack Bldg
21st Floor Conference Room
One Ashburton Place
Boston, MA 02108
Written comments may be submitted by mail to the Office of the General Counsel,
Department of Developmental Services, 500 Harrison Avenue, Boston, MA 02118, or by facsimile (617) 624-7573 until 5:00 p.m., August 1, 2011.
The Department may adopt a revised version of the proposed regulations taking into account relevant comments and any other practical alternatives that come to the Department's attention.
By Order of the Department of Developmental Services
ELIN M. HOWE, COMMISSIONER June 23, 2011
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On the Calendar: SILC ADA Party
The annual Statewide Independent Living Council picnic at Dunn State Park in Gardner Ma will be held July 22, 2011. Swimming and boating activities will be available.
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On the Calendar: Boston ADA Party
The City of Boston Disability Commission is sponsoring an ADA Celebration on Tuesday, July 26, 2011 from 12 - 3 PM on City Hall Plaza.
Some of the day's activities will include:
- Food
- Music by Mix 104.1 radio station
- T shirts (as available)
- Art exhibit
- Adaptive Rec equipment from Spaulding Rehab Hospital
- Mural and face painting for kids
- Remarks by Mayor Thomas Menino and long-time disability activist Paul Spooner
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On the Calendar: DPC ADA Event
The Disability Policy Consortium is inviting everyone to join us July 26 on Boston's City Hall Plaza for a special ADA announcement at 3:15. A few more details next week.
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On the Calendar: Getting Real 2011
Please join the Federal Emergency Management Agency Office of Disability Integration and Coordination for Getting Real II- Promising Practices in Inclusive Emergency Management for the Whole Community. The Getting Real II Conference will take place from September 12-14, 2011 in Washington, DC. Applications are due on August 1, 2011. This year, we are committed to expanding partnerships and sharing promising practices.
Attached you will find the application and instructions for the Getting Real II Conference in several accessible formats. There is no cost to attend and funding for travel expenses may be available for eligible applicants.
We are seeking:
Promising Practices PresentersEmergency Management and Disability Leadership Partner TeamsIndividual attendees interested in disability inclusive emergency management
Please take time to read the application carefully and complete all sections that apply to you.
Please note the application deadline is August 1, 2011. Selected applicants will be notified on or about August 15, 2011.
See the conference application for complete details, and visit www.fema.gov/about/odic for additional information as it becomes available. Conference location and agenda will be published in mid-August.
Please forward this to all who may be interested.
We are looking forward to hearing from you! If you have questions, please contact us at: FEMA-Disability-Integration-Coordination@fema.dhs.gov
Marcie Roth
Director
Office of Disability Integration and Coordination
FEMA/Department of Homeland Security
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News from the Net: Effectivness
Moving from Anecdotal to Evidence-Based:
Caring for People with Disabilities
New Insights on Comparative Effectiveness Research from Mathematica's Center on Health Care Effectiveness
Washington, DC-July 12, 2011-People with disabilities make up a substantial portion of the U.S. population, and their numbers are growing over time. In 2008, 14 percent of the adult U.S. population lived with a disabling condition. These individuals have a variety of complex, and often costly, health care needs. For example, $400 billion, or nearly 27 percent of the nation's total health care spending, went toward disability-related care in 2006. Despite the significant size of the population and cost to the nation, many health care decisions are still made based on opinion or anecdote. At the patient level, people with disabilities and their doctors need more evidence on what treatments work and those that work best. At the policy level, decision makers need better evidence to determine what programs are effective and ultimately improve quality of life for people with disabilities.
Mathematica Policy Research's Center on Health Care Effectiveness (CHCE) recently released a number of publications and hosted a forum on how comparative effectiveness research can improve care for people with disabilities. These resources, which speak to both the challenges and promise of using comparative effectiveness research to address the wide spectrum of issues surrounding care for people with disabilities, include the following:
Identifying Effective Health Care Services for Adults with Disabilities
Choosing Wisely: Why Study Designs and Outcome Measures Matter. In this issue forum, a distinguished panel discusses study designs and outcome measures that can be used to address different comparative effectiveness research questions.
"Choosing Wisely: Selecting Outcomes for Comparative Effectiveness Research on Services for Adults with Disabilities." Debra Lipson, Matthew Kehn, and Eugene Rich, July 2011. This issue brief describes criteria to help researchers select and report on the outcomes that matter most to adults with disabilities and to the providers and others responsible for their care.
"Matching Study Designs to Research Questions in Disability-Related Comparative Effectiveness Research." Jeffrey Ballou, Eugene Rich, and Matthew Kehn, July 2011. Individuals with disabilities have complex characteristics and health service needs, which can make strong study design and implementation a challenge. Because of this complexity, randomized controlled trials, the "gold standard" of study design to evaluate evidence, may not always be necessary or even ethical. This research brief offers strategies and guidance to help decision makers assess which study designs are likely to provide the required level of evidence of comparative effectiveness to answer disability-relevant health care questions.
"Comparative Effectiveness of Care Coordination for Adults with Disabilities ." Melanie Au, Samuel Simon, Arnold Chen, Debra Lipson, Gilbert Gimm, and Eugene Rich, June 2011. Care coordination for adults with disabilities is typically marked by costly services delivered by a variety of providers, but comparative effectiveness research can help address these challenges. This research brief presents a framework for describing the range of personal characteristics, services, outcomes, and financing issues to consider in evaluating care coordination for adults with disabilities. It also identifies key care coordination dimensions that policymakers and researchers can use in developing and researching care coordination. The brief further presents key findings from a systematic review of the recent care coordination literature, summarizes what additional information is needed, and discusses implications for future research on which care coordination strategies work best for various disabled populations.
About the Center on Health Care Effectiveness: CHCE is a resource for policymakers, the public, and other stakeholders, offering broad-based expertise to provide objective answers to today's most difficult health care questions. The center uses the best scientific methods to address challenging, real-world issues faced by patients, providers, and innovators, creating information they can use to improve health care on the ground.
About Mathematica: Mathematica Policy Research, a nonpartisan research firm, provides a full range of research and data collection services, including program evaluation and policy research, survey design and data collection, research assessment and interpretation, and program performance/data management, to improve public well-being. Its clients include federal and state governments, foundations, and private-sector and international organizations. The employee-owned company, with offices in Princeton, N.J., Ann Arbor, Mich., Cambridge, Mass., Chicago, Ill., Oakland, Calif., and Washington, D.C., has conducted some of the most important studies of health care, education, international, disability, family support, employment, nutrition, and early childhood policies and programs.
Improving public well-being by conducting high quality, objective research and data collection.
© 2011 Mathematica Policy Research, P.O. Box 2393, Princeton, NJ 08543-2393
Phone: (609) 799-3535 Fax: (609) 799-0005
Email comments or questions to info@mathematica-mpr.com.
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